Upcoming Cleveland Clinic XMRV study

[FernRhizome]

I've just returned home from a trip to the Cleveland Clinic. Though I went to see my mitochondrial doctor I called ahead to ask if there were now any CFS doctors at CC, given that XMRV was discovered at CC. I was given three names of doctors in the Rheumatology department and had an appointment with one of them. The doctor was quite respectful and understanding and said that when funding comes through in a few months they will start an XMRV study on CFS patients. She gave me a description of the study. It is considered a research study only, so they will not give patients results. But if anyone is interested in being in a study you might want to call the CC Rheumatology dept. & make an appt. with one of the three docs seeing CFS patients. I think you can then participate in the study even if you live outside Ohio.

 

[omerbasket]

Do you know if they are going to use the methods that have been proven to wrok - either the methods that WPI used in the "Science" study, or the methods the CC used to confirm WPI's results for the "Science" study?

And if it is so - Go, people, go and participate. I wish in Israel that would have made such studies.

 

[Cort]

This is very exciting to me because if anyone knows whats going with XMRV in the medical world I would think the Cleveland Clinic does. If they feel good enough about XMRV to start another project on it, then that's avery good sign I think.

Do you know what they're looking at?

 

[FernRhizome]

Well, I imagine that the Cleveland Clinic knows the most regarding XMRV and prostate cancer at this point, but I sensed that the role of XMRV in chronic fatigue syndrome is not at all considered clear in the Cleveland Clinic Rheumatology Department. I only saw one of the three Rheumatologists who sees CFS/FM patients and I really liked the doctor that I saw. But the the doctor that I saw feels that CFS is triggered by stress and that XMRV is just a passing whim. Regardless of that, she was totally respectful and understanding.

So the jury is still out at CC regarding CFS. The handout I received was titled "For Patients with Fibromyalgia and Chronic Fatigue Regarding XMRV. Abstracted from an on-going project. William S. Wilke MD Primary Investigator." At the end of the few pages it states "Because at this time we do not know how to interpret the test, serological XMRV determination will not be part of the evaluation. Appointments can be arranged by calling 216-444-5632."

I was told to call in a few months when the funding for the future XMRV study is in and that there would be more information available at that point. So I am unclear exactly what testing will happen and I will, of course, wait to know more details before making a decision about participating. When the new study starts up they do not intend to give patients results as they consider the XMRV testing to be only for research purposes at this point.

I'll be interested to hear if other people are seen at CC and what kind of response they get.

 

[katieann]

I am interested albeit cautious. I'd love to glimpse the description she gave you, And, is there is a description listed on the NIH XMRV upcoming studies? I used to have that link.. hmmmm...:sofa: